Why I Chose Antibiotics

I get this question a lot, phrased in various ways. I honestly don’t even want to write this. I hate answering this. I think I’d rather die, even. But let’s just rip the band-aid off and get it over with. … . .. .

Lyme disease treatments are an emotionally charged topic. I feel it’s because of the following:

Current lack of understanding in the world of infectious disease over just how best to treat the chronic form of Lyme has bred a multitude of varying methodologies, most aimed at symptom relief or, “remission”. This is very different from the usual very singular approaches to other infectious diseases.

Due to the vast array of treatment options that have been borne from these circumstances, choosing from the Lyme treatment “a la carte” has become much more of a personal choice, often with deep seated personal beliefs involved.

Due to bullet #1, success rates of the constantly growing list of ways one can opt to treat their Lyme produce just as many varying results, often with unpredictability.

Due to bullet #3, we typically see those who obtained symptom relief from a certain treatment then go on to feel very strongly about their chosen path.

Lastly, due to the incredibly invasive nature of the illness and the corresponding profound sense of rebirth one often feels when they get their health back, their chosen successful treatment is forever burned upon their souls as the source of their redemption.

Did any of this make sense?

What is about to happen next is an example of how I couldn’t be more obvious in my attempts to stall this.

Suffice it to say, I literally don’t care AT ALL to even approach a topic that could potentially step on or discount or indirectly assume one path is better than the other. This is my biggest gripe within the Lyme disease community. Naturally, our emotions are so woven into our choices and experiences with this illness and thus defensiveness, over-preaching, and at times, resentment can be seen when we go around touting how this or that got us better in the faces of those who yet are not. Add to this the often steep financial investments involved, it is just another heart string to be pulled if I sit here and say I got better doing A, while you are bleeding from your bank account and still somewhat ill doing B.

I want to make it clear that I do not look down upon any of you who have opted not to choose antibiotics. I know many of you straight up believe I am poisoning myself. I’ve gotten your messages. I am over the moon happy for anybody who has gotten their life back, no matter the method. But I needed to just make that clear. For me, just as it was/is/will be for you, this was a very personal choice and my own emotions are fairly wrapped up in it. So I hope, as I explain my choices, that I can simultaneously extend to you all the respect you deserve for your choices. I probably did not need to preface this post with as much as I did.. I’m so non-confrontational I have likely beat a dead horse even further into the ground just to make sure you all know I don’t want to step on toes. Okay I’m shutting up now.

Why I choose antibiotics… *ahem*

I was raised in a very health-conscious environment. My parents were in to lots of supplements and cleanses and healthy eating. I was rarely fed sugar. We never went to the doctor for colds or flus because my parents believed it was more important that our immune system grow strong on its own. My siblings and I were not given all of the vaccinations the other kids got. We played in dirt and raised a lot of animals and survived just fine without antibacterial soap and neosporin. In fact, I had never taken a single antibiotic from birth to Lyme except for one incident as a child when I had walking pneumonia.

Despite our herb-lovin dirt-rubbin ways, I also come from somewhat of a nerdy medical family. My mother is a registered nurse. My brother has bachelors degrees in both Biology and Pre-Med and will begin working on a PhD in Neuroscience this year. I am well enough to begin attending school again myself this year and will be working on my own degree in either Biology or Microbiology. My dream field is virology or immunology. I feel I have a fairly balanced understanding and appreciation for holistic as well as western medicine, especially their applicability in different situations. And as a side-note, shout out to all the medical doctors who sacrificed nearly a decade of their lives to their field and do much good for society. I know many of them have sizable egos, and I know the Lyme community views them with almost vehement abhorrence at times. But if I may commit my first offense in this post, I’m a bit miffed at the memes circulated on the Facebooks and the Instagrams about how us Lymies are smarter than MDs and whatnot… it bothers me. Of course a neurologist doesn’t have the full scoop on infectious disease, nor does gastroenterology or cardiology. But there are currently boxes and boxes of medical textbooks in my garage that proves we really aren’t any smarter than them. And is it fair we demand they stay up to date to the minute on new research in a field that may only briefly touch theirs when they work tirelessly 40+ hours a week serving people in the community? Perhaps none of us are at fault for the inability to diagnose issues for which little physician training is offered and in a field that is only very recently starting to open? Are you still reading this? Have you left yet? I’m so nervous please like me.

During my own search for a diagnosis, I believed I had Lyme before I could find a doctor to confirm I had Lyme. Many specialists disappointed me at the time, often to the point of tears before I could even hobble off the exam table. I have since come to completely forgive them, having a better understanding of their place and mine. So as I was searching, I began on my own instituting the dietary changes that I knew would strengthen my immune system and other important physiological processes in my body. I started a ton of supplements. I began taking anti-microbial herbs and colloidal silver and began detoxes and cleanses with juicing and binders and gentle metal chelators. I did this for months. For me, this did nothing. Well, I’m sure it did much. But where it mattered as far as my ability to function, I only continued to get worse.

I did my Lyme research. I poured over published studies and available medical journals. I did not study treatments as much as on the bacteria itself. How it survived, how it would hide, how it would cleverly defend itself with daunting intelligence against the attempts of my immune system to eradicate it. I researched how it interacted with other bacteria and parasites to form strongholds and how it would drill deep into tissue where my immune system could not follow. Then, with my new understanding, I began researching treatments. I wanted to know my enemy first, and then choose how I wanted to fight it based on my knowledge of where and how I could exploit it. Obviously, I chose antibiotics. Here’s another bullet list.

Borrelia, in my opinion, is a super bug. It may not kill as fast as Staph or MRSA, but it does kill. And, just like Staph or MRSA, we bomb with antibiotics to lower the bacterial load enough for the immune system to be able to take over and handle population levels from there. I felt most comfortable applying that same methodology to Borrelia.

Because Borrelia can so quickly change its surface proteins, if your bacterial load is high the immune system will not be able to keep up with the constantly changing antigens it is exposed to. This results in Borrelia laughing as our immune system can’t produce the correct antibody to target the current antigen as there is too much chatter still over the previous antigen made from the previous surface protein. I hope you came to this with a basic understanding of antigens and antibodies. I’m really working on not derailing trains of thought in my posts. But anyways, because of this, I felt antibiotics would succeed where my immune system was failing because they don’t care ’bout no antigens.

Borrelia can also drop its cell walls (where surface proteins would be) completely, thereby giving your immune system absolutely nothing to build an antibody for. Borrelia usually does this prior to entering our own cells. From there it’s home-free. I felt intra-cellular antibiotics were the best way for me to target the ones that decided to play this little game.

Knowing I had Lyme, I likely also had co-infections. This is a lot to ask of the immune system. The two main offenders in this department were more intra-cellular bacteria or parasites – Bartonella and Babesia. With high bacterial loads of each, I felt neither could be truly conquered without the help of again, intracellular antibiotics.

Knowing my Lyme had invaded my Central Nervous System and had crossed my Blood Brain Barrier, I felt I needed an aggressive approach. I was terrified of an aggressive approach, but truthfully I was also slowly dying. The brain has a separate immune system composed of glial cells, but these cells have so many more duties assigned to them than simply scavenging for foreign invaders. And, dietary supplements and herbal antimicrobials (while they can cross the blood brain barrier to a degree) would never saturate my brain and nervous tissues to the degree needed to significantly lower my bacterial load. I felt for me, an aggressive intravenous antibiotic approach would be best able to cross my BBB.

Biofilms. My immune system can’t penetrate them. Certain natural substances can poke holes in these films and allow some exposure to your immune system, but if my immune system can’t immediately extinguish the colony I am just opening myself up to migrating bacteria that is possibly armed with the instinct to build even stronger bioflims somewhere else. I knew my immune system could not handle alone what was under those biofilms.

Lastly, I knew my immune system in general was on the cliff of kaput. I did not feel my immune system could ever heal, regenerate new cells, and restore proper communication between cells if I had high levels of the bacteria that whatever was left of my immune system was hard wired to try to kill (especially since Borrelia make it a personal mission to destroy your immune system for as long as they are present). I needed to stop the suicide missions of my immune cells. I felt antibiotics would be the fastest way to get things under control enough to allow my immune system to begin to heal and regroup.

There is much yet to be researched on biofilms and their role in the persisting of this disease. We know that co-infections will hide under these films with Borrelia, even Babesia will. We know few things can penetrate them. We know for certain the immune system can’t. We know that the illusion of remission can happen when we scare everything into biofilms. I believe much is yet to be discovered about biofilms that will help patients recover fully from this illness in ways we currently aren’t.

Knowing the crucial role biofilms played, I wanted a doctor who incorporated heavy use of biofilm busters in his protocol and not just that, but one who knew how to use them most effectively. In the same breath, believing that the best fit for me was antibiotics, I wanted a doctor who knew how to administer various antibiotics and anti-parasitics in combination with biofilm busters with precision. This is what led me to my current doctor, at great sacrifice to me and my family due to the distance between us. I regret none of it.

Many have asked me if I have tried more holistic measures such as hyperbaric, peroxide drips, vitamin drips such as Myer’s cocktails and such. My answer is always the same. I believe in the benefits of many of these therapies. But in my personal circumstances, I believed the antibiotic and supplement protocols my current LLMD prescribes me come first. I needed to lower my bacterial load first. If I may use an analogy, I felt like holistic therapies (which by nature, are more designed to help the body heal and strengthen) would be like trying to rebuild a home from fire damage while the fire is still raging. I do not believe holistic measures alone would have gotten me to where I am today. That being said, I absolutely incorporated nutritional and supplement supports to urge my natural systems on the path back towards healing. As for more aggressive (and also expensive) holistic therapies, I fully intend to maintain my remission with occasional use when the day comes. For now, I do not want to overwhelm my body with multiple therapies.

For further explanation, and perhaps to put it a bit more bluntly, I look at and treat my Lyme as I mentioned before, a super bug. I wouldn’t feel comfortable treating MRSA holistically, or Tuberculosis, or Malaria, or Bubonic plague or any of these illnesses caused by serious business bacteria. Lyme won’t kill me as fast as these bugs will, obviously. But Lyme will eventually kill if left unchecked. It may be Alzheimers, or MS, or Parkinsons, or Lupus, or ALS. But it will stem from unchecked Lyme. I stress this is my personal opinion, and again I stress I fully respect your opinions if they differ. That’s the beauty of a free world.

I know a lot of people have a really bad taste in their mouth over antibiotics for Lyme. We don’t like to use them long term, it’s true. And I also believe few doctors, even LLMDs, know how to properly use them to get people to remission. Did you know Tuberculosis requires at least a year on antibiotics? We don’t talk about this, because the CDC recognizes it as a necessary and successful treatment. Perhaps because Lyme patients don’t die immediately, therein lies the time to have controversy. I know the herxheimer effects from antibiotics are brutal. Again, my personal opinion, anything that kills Lyme is. They are bacteria that constantly ooze a known neurotoxin. You kill that bacteria, its cell contents rupture and bleed into your surrounding tissues. That’s a little bomb of neurotoxin (Bbtox1) going off suddenly. It takes the body a while to clean that up, and then even longer to repair that damage after. It’s not a pretty process. I understand completely why so many don’t want anything to do with antibiotics. But again, my belief, the simple nature of the bacteria requires some suffering paid by the host as it dies. It’s difficult for many to accept this – no matter the treatment method. I also understand the many concerns over gut health. It’s a sacrifice I’ve felt willing to take in my circumstances.

Hopefully this wasn’t too long. And hopefully I did a fair job of explaining myself. Again, I receive this request a lot and felt it an appropriate and fair question. And hopefully I haven’t made too many enemies among the ride-or-die holistic crowds, because really, we don’t have to be separated. I’m one of you too. I’m taking ashwaganda right now, even. See? I’m gonna put Maca powder in my morning smoothie in a bit. I’m gonna stain my fingers green as I pop a handful of chlorella tabs in my mouth after. I may just do some lymphatic drainage after that. Just don’t ask me to give up my antibiotics yet.

I feel like some of you are judging me now. It’s probably just me. No? Yes? No?!

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45 comments on “Why I Chose Antibiotics”

Manayin

November 19, 2016

Thank you for this post ! Your experience and point of view is really really interesting.
Since I know that I am suffering from this disease, lots of people told me “ooh you’re taking antibiotics for a really long time, that’s not good for you body…”. I read books of people who recommand to heal with only natural products, etc. I really trust that it can help and maybe heal some people. I was even studying “naturopathy” when I learnt what disease I have ! But I made researches, met a doctor who seems to know what she does… and in a weird way, my body reacts better to antibiotics than to natural products. So that’s my treatment for the moment, and I still take sometimes natural products, I have more than ever a “natural” way of life… but, I think that we have a lot of things to learn from this disease (and co-infections), I think we can only be surprised, again and again… so yes… everyone does the best for himself, let us respect each other, and hope that research will bring new possibilities 🙂
(Sorry for my english. I hope this is understandable)

Thank you for the post defending the use of antibiotics for Lyme. I get so tired of everyone telling me how harmful antibiotics are long term…I know this, but having billions of toxic bacteria invading every part of your body is much worse. Especially when no one really knows what the long term effects of these bacteria are.

I have been on abx and homeopathic remedies for almost 10 months now with little change in my condition. After seeing several LLMDs who had no idea what to do with me I finally broke down and went to one of the best LLMDs in the country, in my opinion. After my first visit they found the missing piece of the puzzle…Brucella. I have no idea when or how I contracted Brucellosis but the know treatment for Brucellosis is long term high doses of intracellular abx, herbs have little to no effect. I just started the Brucellosis protocol yesterday, I am expecting a rough road ahead, as I am on higher doses of daily abx with no breaks for 6 weeks. As you well know typical Lyme treatment pulses abx. For now treatment for Lyme and the other co-infections I have is on hold, although the abx I am on should keep it under control.

I’m not sure why I am rambling on about all of this, I guess it just helps to get it out to someone who “gets” what Lyme does to the mind and body. Thanks for the great posts and keep them coming.

Awesome blog! It’s always cool hearing other people’s journeys with Lyme. I believe that I got it from my mom, because both she and my sister have it. Unfortunately I didn’t respond very well to antibiotics. Due to mold exposure, I have chronic inflammatory response system, and am currently taking cholestyramine to detox from the toxins. Fortunately it works great to detox from Lyme toxins as well. I hope to get rid of this soon, It has been quite the process.

I must say thank you.. I don’t even know how I got to your blog. Not only are you a great communicator, but I have been so overwhelmed by all the plethora of Lyme protocols, posts of what works and what doesn’t, of numerous doctors and such proclaiming they have the answer I just about gave up. But your article has taken away much of the confusion and doubt and given me at least some fight and hope back.

Hi Tarai I read your story obout why you chose abxs for treatment along with your above story, I cant beleave how much we have in comon, I know we are in the beginning stages in society to just begin to understand this disease. I to went on abx treatment ,ive been treating for just over 7 years and about half way 3 to 4 years into treatment I was put on a biofilm buster along with my abx, my immune system soon acknowledge it had a disease at hand as the biofilm was being broke up. My C4A levels jumped from normal to very high. Its stayed high for awhile and started a slow decline with a few small jumps. It has been 3 to 4 years now since my c4a soared, my last LLMD apointment jan 6 16 my doc told me my C4A level is now back to normal. We lowered meds abit because of me feeling much much better, but will be monitored for some time , he also told me my CD57 is climbed up to normal. I want to share this with you because my experience with the biofilm factor and how the microbes can hide so well under years of abxs and can then be exposed and destroyed . I also want to share with you I too had this as a child undiagnosed. I also was a part of the case studies that helped pass the MINNESOTA STATE LYME BILL last year. Im much older then you 57 years young and I beleave abxs were my only hope to have at least the last part of my life well.I want to say good luck on your treatment and god bless Bill

Great comment. I think it’s equally important people realize there are NO quick fixes for this, and that progress takes a lot of time. Thanks for sharing your story and so glad you are doing much better!

You are such an amazing writer. Love you Tara! Another thought I had while reading this is of my poor little niece, not quite 2 years old, going through brain cancer and the months of chemotherapy she has had to do. Literally poisoning her poor little body in order to give it a chance. Such hard choices to make, and so individual that really nobody can judge, or should. I’m so glad that you are on the mend and grateful that you are sharing your story to help others, or at least give them information so they can help themselves make informed decisions. You are aMaZiNg!!

Good luck with your future school endeavors. From the depth of your research, I believe you will be very successful in whatever field you choose. I’m dealing with an immune issue of which I haven’t yet identified the source. Your explanation of Lyme is very helpful in understanding it’s virulent nature as a ‘super bug.’ In my research I’ve come across the Gerson Therapy http://www.gerson.org. It was apparently highly successful in treating tuberculosis. It may be something to incorporate to detoxify and restore the immune system after (or possibly during) abx treatments. All the best in your healing journey and following your own intuition to fully restore your health.

No judgement here! I applaud you for your honest and well-written post. I think antibiotics have their place in medicine and their success has been proven time and time again. I also know everyone is unique and benefits most their own specific treatment plan. I tried the smallest dose of Minocycline for Lyme and barely made it one week, though. I’ve been afraid to try antibiotics again. It was like having all of my normal symptoms (POTS and Lyme), multiplying their intensity by 10, and then adding in nausea and dizziness. There was one night where all I could do was lie on the floor. I literally thought, “I’m just going to skip dinner tonight” because I was too sick to be in the kitchen making it. I’m sorry for my grim, personal story. I truly wish I had tolerated Minocycline better. I guess that particular medicine and/or treatment wasn’t right for me. Good luck to you and keep us updated!

Just my opinion, not anything else. You sound extremely sick. This is just a very humble suggestion. Maybe something like take a weaker dose of Minocycline, and if you react strongly, weaken it more. Again, just my opinion, but I am encouraged you reacted so strongly. Could it have been a strong herx? When you can tolerate a dose, take it from some time period, stop for some time period, then take it again. Eventually strengthen it. Just my humble opinion. Everyone has to decide what is best for themselves. I pray that Lyme victims will have a choice of treatments, and suggestions. May freedom ring!!!

Or herxheimer effect. With Lyme, when you take something like an antibiotic that kills the bacteria, the bacteria release toxins that exaggerate your symptoms or cause new ones. It can last from a few hours to several days. Taken regularly, we all typically get much worse before we get better. Your reaction was very normal and actually a sign that the minocycline was very effective. We call this herxing, short for herxheimer effect.

High five! I believe 100% in using abx. They saved my life. After 2+ years straight with a variety of abx, I’m taking a break. Trying out some herbals and so far making more progress. We’ll see how it goes. If I start to slide, I will go back to antibiotics in a New York second. Thanks for writing this and keep on kicking some Lyme butt!

Originally, I tried Stephen Buhner’s protocol for Lyme. But the amount of herbal pills needed as I continued became daunting. Right now, one of my doctors has prescribed my MC-Beyond Balance 1 drops. It is progressive as well. I’m up to 13 drops twice daily and before I see her in March, she wants me at 25 twice daily, if possible. Working on it!

Well written Tara. One example of group think in Lyme-land is you must treat the co-infections first before you can truly tackle Lyme. That is an opinion of some LLMD’s while others have had more success doing the inverse. To your point this disease and its impact is very unique to the individual for a variety of reasons. What works for one may not work for others but as long as we keep sharing our ideas and improve the overall body of knowledge in which to draw from everyone suffering from these little bastards will be in a better place. Best of luck in your studies!

This was a great read! Very articulate and I couldn’t agree more! One of the biggest problems I see when I read “antibiotics” don’t work! IS that there is no standard protocol (even amongst “lyme literate” doctors) on what to prescribe, how to administer (dosage) and what if any supplements to balance them with.

There is no ABX protocol, because there can be no protocol. Depends on genetics, what “nature dirty needle” put into you. etc.. Lyme victims are so much alike, I can spot one in 10 minutes ;-), and yet we are so different. Just my opinion, no judgment.

Love your insightful posts. I went 22 years before being diagnosed and plan to attack this dreadful disease with an arsenal of antibiotics over the next few years, along with infrared sauna detoxing. I worked in health care for 13 years and saw antibiotic used for every bug known to mankind with great success. I, personally, don’t consider Lyme any different than TB or MRSA or Strep. May we all find better health in 2016, whichever treatment options we choose.

Thank you for your throughly explained decision process. I have been sick for 12+ years, (MS, CFS, FM, Hashimoto’s) and have worked my way to the Lyme/Co-Infection diagnosis. I have chosen to try the Cowden Protocol as my first step, but I won’t rule out antibiotics if necessary. Your descriptive post and explanation of the process is very helpful.
Rhonda

I’m on pharmaceuticals for Lyme too — Doxy and Plaquenil right now, as I’ve just begun treatment — and I want to thank you for this post. I’ve second-guessed myself so many times over this but ultimately, I have to remind myself that God led me to my practitioner (a brilliant Functional Medicine practitioner in my city) and there’s a reason I was put on this path. I know people who have done or are doing the herbals and some have gotten wildly better, while others haven’t gotten any better at all. It’s so body-specific, and it’s unfortunate that the community of Lymies hasn’t yet gotten their minds around that: for each of us to heal, each of us has to find our own route to wellness, and it probably won’t be the same for a single one of us.

Anyway, I’m really happy to hear you’re feeling well enough to start to get back to school — you’re giving me hope. I’m one of the fortunate ones who has been able to keep working and living my life (albeit feeling like I’m carrying a bag of lead weights around in my head and on my body all the time) through the six and a half year ordeal I went through before being diagnosed, three months of pre-medication preparation, and now 5 weeks on Doxy & Plaq. I haven’t seen much in the way of improvement of my symptoms yet but like I said, you’ve given me hope. If YOU have gotten better, then surely I can get there too.

As always, a hearty thank you. It might be easier for me to reblog your entire blog because I love and respect your posts so much (and always reblog them, haha). And I’m too busy and feeling yucky to catch up on my own.
🙂
Keep writing, T. I’m immensely excited to hear of your goal of going into immunology and medical stuffs. You’ll definitely make this world a better place. You already do!!